"Mommy, It's Not Fair"

Thursday, March 5th, 2009 

Well another good day under our belts. Daddy and Jacob had a good night last night. the tummy pains are still there and a mystery but overall a good night. We had a good day today, he was awake and talkative and playful. We asked him if he wanted to go home for a few hours today and he said "not today". Either the trip is a little exhausting for him or he is not ready to see his home again, either way, it was a good day in or out of the hospital.

This evening however....oye! Jacob had a meltdown this evening. One minute he was sleeping and the next he is crying and hysterical and out of control. I tried to figure out what was wrong but he just kept saying "no mommy, its not fair, its not ok" everytime i would say its ok Jacob mommy is here, he would say "no its not ok, nothing is ok, even when you are here its not ok" "none of this is ok". he kicked me and screamed and cried. it lasted about half an hour and i suprisingly composed myself to try and help him get through this little breakdown. My nieces and sister were visiting when it started and my niece started crying and it broke my heart to see her react like that because it broke her heart to see him like that. 

Jacob is going in for a little surgery tomorrow. As minor as it is we always get nervous because it is general anesthetic. As you all know Jacob cannot swallow so he cannot eat or drink and therefore has a g-tube. A feeding tube directly in his tummy. Tomorrow he will be going in to have that switch from having it go to his tummy directly into his intestine. The idea is to have the feeds go directly into the intestine so if he does keep vomitting he will still get the feeds he needs. He will still get the calories and nutrients he needs and then we won't have to stop the feeds everytime he throws up. We have no idea how its going to go but i suppose it makes sense. We are hoping at least that if he can start gaining weight and get stronger than maybe other things will get better. who knows anymore but we are willing to try anything at this point. We just want to see him start getting better. I am exhausted of taking one step forward and a hundred steps back. We can't take it anymore. Its so frustrating to see all the other kids get better, go home and see mine get sicker with no answers. 

So here's hoping for the best. He will probably be sick over the weekend from the anesthetic but one of the doctor's on his team said he was going to try a different drug to put him to sleep so cross your fingers and wish us luck and please think of Jacob. 

Again I want to thank you all for all your support, your messages and your prayers. I get so emotional when I read your thoughts and comments and I feel blessed to have so many people sharing our pain.